Hi Melvin-
I'm 70 years old and have had (and been treated for) prostate cancer since 2007. One of the known side effects of "androgen deprivation therapy," which is the standard of care after radiation and/or surgery, is adverse cardiac effects resulting from disturbance of blood chemistry. I was a competitive rower in high school and college and, until recently, in masters competition. In 2011, I discovered my heart valve problem when, about 1 km. short of the end of a 4.5 k race, I started going "lights out." I finished the race, rowing intermittently with my other 7 crew mates doing their best to make up the difference. The diagnosis was regurgitation through my aortic valve, caused by the "leaflets" failing to seal tightly. Paradoxically, with this condition, once you pass a certain threshold and the body requires still more blood flow, the heart becomes less efficient as it tries to meet the demand by pumping faster. I have a (previously unknown) congenital valve defect: mine has 2 leaflets instead of 3. The cardiologist speculates that my changed blood chemistry has caused deposits to build up on the leaflets, making them less flexible and causing a poor seal. Anyway, his recommendation in 2011 was just to monitor the situation and watch for enlargement of the heart (a bad thing). I could continue rowing but backing off the effort when I felt myself approaching that critical threshold, which is what I did. I took statins and saw my cardiologist every 6 months. Beginning spring 2018, I was beginning to feel weaker and quit rowing. Last fall, my cardiologist said my heart was beginning to enlarge and referred me to a team at GW University Hospital here in Washington that does TAVR. So, I went through a series of tests and interviews. TAVR apparently is FDA approved for stenosis-where the valve opening was constricted by calcium deposits. There was some concern that, in my case, the calcium deposits were inadequate to properly anchor the replacement valve. In my case, the valve is quite large-apparently requiring the largest diameter replacement valve that is made. An angiogram (part of the standard preliminary for TAVR) showed an 80% blocked circumflex coronary artery, so that was addressed with a stent immediately. Because of the state of my cancer (stage 4), I think there was some reluctance to go forward although I was never told that, and my oncologist supported having the procedure done. Ultimately, as a final test, the TAVR team decided at the last minute to put me on a treadmill. Depending on your point of view, I either passed or failed-my output was too good. So, no TAVR for me. I will say that the stent has markedly increased my capacity; I feel better and stronger than last fall.
So, my suggestion is (1) find a cardiologist who is willing to monitor you every 6 months without jumping to surgery of some kind and (2) don't consider surgery until your normal daily activities are interfered with. When doing aerobic exercise,your body will definitely tell you when it's time to ease up. As for me, I take daily walks and can cover 1.8 miles in 30 minutes routinely without breathing hard. That's not where I was last fall. Regarding TAVR for regurgitation, there is a team at GW University hospital in Washington, DC who will do the procedure.This hospital is well-known for its cardiac unit. I believe former VP Cheney gets treated there.
Good Luck!
Bruce
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R Bruce Beckner
Arlington VA
rbbeckner@gmail.com------------------------------
Original Message:
Sent: 08-03-2019 19:27
From: Melvin Rich
Subject: Leaking aortic valve with severe regurgitation
Thank you for sticking with me, Joe. The unanimous medical opinion in the San Diego area is that a TAVR procedure will not work for a leaking AV and no one will try it. However, I have found one (maybe two) cardiothoracic surgeons that can, have, and will do a mini-sternotomy to replace a leaking AV. I am following up on this and will hope for the best. I remain 148% asymptomatic and am in no hurry to "get on the table." Before I found Mended Hearts, I found endless horror stories on the internet from post-op patients (some quite young) about the excruciating pain, depression, sleeplessness, etc., lasting for months, if not years (or lifetimes). Having found Mended Hearts, I have discovered that these horror stories continue. At some point we each have to honestly acknowledge our real life priorities. Thanks again. I will keep you in the loop. Melvin
Original Message------
Melvin,
I believe you said you could not get a TAVR because your AV was "leaking." When doing my volunteer gig today at Health Park I checked this with one of the TAVR medical staff. Depending on the stenosis of the valve, the Edwards valve may not work but the Medtronic valve most likely would work. So in your area, the Dallas Medical might work for you and one of the two doctors doing the work would be Dr Dewey.
Good luck and keep me posted, please. And Keep Asking and Keep digging.
Regards,
Joe J. Ft Myers